First Ever Post - Just need to rant right now!

So, I had a pretty good day today - I managed to spend some quality time with my husband doing bits and pieces to our car and managed to catch up with my oldest friends for the first time since February- until this evening and now I've got that nagging pain in my lower back and right side. Just a bit fed up of it all to be honest.

I've never posted about my pain/condition/been completely honest about how I feel before. I thought it may help writing all of it down and having other people’s opinions who may have been through similar experiences as although my husband and friends are supportive and empathetic they don't really understand.

In the beginning of 2010 I was put on a long term antibiotic for a skin condition. Because this would mean that my contraceptive pill wouldn't work and I had been on it for around 5 years anyway (since I was 14 - for contraceptive use) I thought it would be worth taking a break from it completely. Since then my life has pretty much been hell. I started getting sharp stabbing pains constantly on my right hand side - to the extent I couldn't lay down and sometimes couldn't sit. I went to the Doctor who originally thought I had an ectopic pregnancy. That turned out not to be the case and I was back and forth for a good few months with them not knowing what it was. I was then sent to the gynaecology consultant around September 2010 who, with confirmation from an ultrasound, told me I had poly cystic ovary syndrome and gave me progesterone based contraceptive pill. I was devastated as he said there and then that I may not be able to have children and being 19 at the time and a very broody person it was heart breaking. I would call my mum in the middle of the night and cry to my now husband when friends would announce on social media that they were pregnant - I had always wanted to be the cliché housewife looking after our two children and having a happy family (something I didn't have growing up and wanted with all my heart). During this time, because I had been in and out of work due to hospital and general pain I lost my job. However, things started to look better as the pain started to go and I was only really in pain during my period - which I suffered heavy bleeds, huge clots and excruciating pain but that was only every other month because my consultant had told me to take the pill back to back. I got a full time job again and the majority of the time I was pain free which was amazing. I eventually came to terms with maybe not being able to have children and my husband and I agreed that we would try when I was 30 but if it didn’t happen it obviously wasn’t meant to be.

Then around Christmas 2012 my pain started to be more regular, and wasn't only when I was having my period. I got referred back to the consultant who thought I may also have endometriosis (roughly June 2013). The pain got worse while I was on the wait list for exploratory surgery - during which time I got married (yey!).

I had a diagnostic laparoscopy, hysteroscopy and D&C in February 2014 - the only reason it was in the Feb and not any longer was because I had to have emergency surgery for an abscess from an ingrown hair and the consultant wanted to do it all together - otherwise I would have been waiting longer! The consultant confirmed I also had endometriosis as well as the PCOS and started me on Prostap injections for 6 months with the hope it would 're-boot' my system.

The 6 months I had my injections were great. I was more than happy to cope with the side effects of the menopause and feeling pretty numb emotionally for the relief of not being in pain at all. It was bliss to say the least (and as I suffer from Reynard’s Syndrome in hindsight it was lovely struggling with the hot flushes instead of being cold constantly!).

Since then though, things have been pretty much getting worse. I was put onto Cerelle (?) contraceptive pill however the pain was back and getting to the point where it was constant and the bleeding was tremendously bad. I had to be on Tramadol to cope with the pain on a daily and constant basis and I couldn't sleep as it wouldn't completely cover the pain so was only sleeping every other night. I was even given amitriptyline as a sedative but that did not touch me. I couldn't go into work as I work in a call centre and wasn't allowed on the phones while 'off it' on the Tramadol. The consultant agreed the best thing to do was to try and remove the endo - I had begged him to put me back on the Prostap injections but he said he couldn't give me any longer than the 6 months I had been on it because I am only 24.

In January I had another laparoscopy to remove the endo and to fit the Mirena coil. I had around 2 weeks post-surgery of not too bad pain - but I expected pain just after anyway and I also managed to go cold turkey from the Tramadol which was the worst experience of my life.

However, since the surgery I have been in and out of work again because I bled constantly for the first 3 months and the pain started to get worse again. GPs were saying that the pain is to be expected because of the scar tissue and possible areas that weren't removed during surgery and the fact that I stopped bleeding after 3 months was a good sign that things were going to be getting better as it can take up to 6 months for the coil to kick in fully.

Last Saturday however I started bleeding again. It hasn't really made the pain any worse, but that hasn't really got any better since the surgery anyway. I am struggling to cope because I haven't been in work other than half a day for over a month. Paracetemol and Ibuprofen don't touch me. I refuse to go back on to Tramadol because of the way it made me feel and how awful it was coming off it. I am using 'alternative' pain relief but it doesn't cover the pain completely and I obviously can't work while I am using it.

Although work has been as supportive as possible with the circumstances offering me flexible time and days I still find it hard to make it in. My sleeping pattern is so messed up because of the pain (usually sleep from around 5am - midday) and I’m finding it really hard especially at night when everyone is sleeping and I'm still awake in pain. I thought my bleeding was coming to an end yesterday and today because of the amount and colour but this evening I’ve had more clots again and its back to being a full bleed.

I've got the consultant on the 20th May as my follow up to surgery I had in January. Does anyone have any suggestions to questions and possible next steps to discuss with him? I've already seen that a few people have talked about what stage they have and this is something I know I'm going to ask because I don't know this. I'm also planning on asking him how much endo they were able to remove during the surgery in January because he said they may not be able to remove it all depending on where it was and I saw him briefly after my surgery but I was still groggy and half asleep and on my own so I forgot.

It's getting to the stage where, and I know there is probably people on here and out there who have had it worse than me, but I've told my husband and my manager at work that I am seriously thinking of asking to have a Hysterectomy. Just because of the fact that I have both endo and PCOS and have been told that I may not be able to have children and I feel that I would rather have everything removed now and not be in pain than be in this pain for many more years and then maybe be able to have children but also maybe not. I've also been told to try for children now because that can sometimes help (?) but I am only 24, I've been married for nearly two years of which the majority of the time I have been in pain and I want to be able to live my life with my husband pain free and we've both agreed that if all goes to plan (pain getting better etc.) that we would start to try when I'm 30 so that financially we can afford it and we've also been able to do things that maybe we wouldn't if we had children e.g. Travelling.

I know I've gone on a bit of a rant and I do apologise to anyone who has made it to the end of this. It's felt quite nice getting it all off my chest for once but I just feel like crying because I don't know how much more of this I can cope with - emotionally, mentally and physically.

4 Replies

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  • Hey Lovely!

    Really sorry to hear your having such a miserable time, really wish there was something i could say to make everything better, but i think everyone knows this disease can just take over your life....which it seems to do for everyone :(

    Im also 24, and was diagnosed by a lap in June last year, and since then it definitely seems to have got worse! It definitely isn't just the physical toll it takes on you, but the emotional side aswel, which can sometimes me way harder to sort out!!

    I know i haven't been helpful, but its so hard to know what to say! Just remember you have an amazing husband who will support you, and so many ladies on this forum are amazing and will try and help you the best they can!!

    I hope your feeling better soon!

    Big hugs!!

    Emma Xx

  • Hi - there might be others worse than you - we can't know that - but if they are it is because they started off like you and failed to get proper treatment. We must make sure you don't become one of them.

    First of all can you obtain copies of the operative reports from both laps that were sent to your GP. There will be a small charge but not much. I should call them today so you have them before your follow up - that will determine where we go from here.

    Prostap mimics menopause as you will know by depleting your body of oestrogen. and the reason you can only take it for 6 months is that lack of oestrogen has several healths risks, especially at your age, such as bone loss. You should have been given 'add back' therapy to compensate. But these are serious medications that can't be taken forever. Likewise putting you into a surgical menopause through a hysterectomy carries the same risks and endo can continue after hysterectomy anyway. The only effective approach is thorough removal of your endo.

    Endo is an autoimmune condition and sufferers often have others, so Reynard's was an indicator. Click on my username and read my first pot on endo and its many symptoms.

    Get back when you have the reports so we can decide what's next. xx

  • Hi, sorry to read that you've had such a terrible experience. I was 24 when I was diagnosed with endometriosis, now 25. I only had my lap in December and so far I seem to be quite lucky in that things have got a little better, hoping that will continue though reading all the forums it doesn't seem the case for most ladies. I was the same as you in that the consultant came and advised me/asked if j had any Qs straight after recovery when I was still out of it on morphine, and I didn't get a follow up appointment so ended up arranging a gp appointment to ask some questions. She actually recommended this forum to me, along with other advice. I would find out what stage you have, though the consultant said that the stage wasn't always indicative of the level of pain that people went through. I hope it doesn't come to a hysterectomy for you, but you should ask what your options are , are there other treatment options before that? and regarding children. I think you need to ensure he knows how bad it is making you feel physically and emotionally. Though I think the fact you are considering a hysterectomy must show that. Sorry I don't think I've been overly useful to you. I wish you all the best and hope something works soon! X

  • Hi guys.

    Thanks for your support. Today has been a long day as I didn't sleep last night and actually turned to Tramadol again to get some sort of relief. After half a day in work exhausted isn't the word!!

    It really means a lot that I know other people are out there too and understand how I'm feeling!!

    Lindle - I've briefly looked through your previous post but i think I need to take it all in once I've had some sleep! Work have requested my Drs notes anyway and for them to be sent to me first so they're covering the charge and hopefully that will go through in the next few days so I can get some info before I go back to see him :)

    Time to try and get some sleep as I've been awake since 11am yesterday......

    Thanks again guys and will re read and look forward to discussing when I'm not exhausted!!

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